[Episode 136] In today's Social Work Podcast, we speak with Allan Cole about his experiences with Young-Onset Parkinson's Disease.
Parkinson's Disease affects nearly 1 million people in the United States and more than 6 million people worldwide. It is a a progressive neurological disorder that primarily affects movement. I’m releasing this episode in April because April is Parkinson's Disease Awareness Month, chosen because it is the birth month of James Parkinson, who first identified the symptoms of Parkinson's disease more than 200 years ago.
Full disclosure – before this episode I knew that my childhood hero Muhammad Ali and the actor Michael J. Fox had Parkinson’s, but I didn’t know they had Young Onset Parkison’s Disease. I also assumed that it was a terminal illness that significantly decreased your lifespan like Multiple Sclerosis (MS) (https://www.mayoclinic.org/diseases-conditions/multiple-sclerosis/symptoms-causes/syc-20350269) and ALS (aka Lou Gehrig’s Disease). I was wrong.
And that’s why I spoke with Allan Cole, a person who lives with Young-Onset Parkinson's Disease. He also serves as the Dean of the Steve Hicks School of Social Work at the University of Texas at Austin. And, as you’ll hear in today’s episode, Allan's personal and professional journey is one of vulnerability and profound empathy, qualities that resonate deeply within the social work community.
In today’s episode, Allan shares his personal journey with Young-Onset Parkinson’s Disease, acknowledging diversity of experiences people have with Parkinson’s. We explore the emotional landscape of receiving a Parkinson's diagnosis, the misconceptions surrounding the disease, the difference between disease and illness, living well with Parkinson’s, the need for more research and awareness, what social workers should know about working with people with Parkinson’s Disease, and the importance of empathy and support in navigating its challenges. I appreciated how Allan spoke about his journey in the context of his many privileges, acknowledging that his ability to be vulnerable was a manifestation of his privilege.
In the years since his diagnosis, much of Allan’s scholarship and advocacy has centered around caring for people living with Parkinson’s disease. He has written or edited several texts on Parkinson’s disease, including the 2021 Oxford University Press book, Counseling Persons with Parkinson’s Disease, and two books on lessons learned from Parkison’s Disease: Discerning the Way (Cascade, 2021), and Jumping to the Skies (Cascade, 2023). He also has two books of poetry, Riding the Wave (Resource Publications, 2023) and In the Care of Plenty (Resource Publications, 2021). He moderates a website called PDWise.com, a hub he created for sharing personal stories, experiences, and wisdom gained from living with Parkinson’s, which encourages personal connections and opportunities for learning.
Download MP3 [46:06]
